Thursday, September 14. 2017

To start off, let's state the obvious: this blog has been silent for a long, long time. If you're looking for updates on Ethan, we keep his Facebook page, Hope For Ethan, updated on a consistent basis and you can follow along there whether you have a Facebook account or not.

I'm brushing off the dust here to formally write out something that I've been asked about a lot recently: Ethan's coping scripts. Because his life is always going to include more than its fair share of medical procedures and hospital stays and ER visits and and and, we've been incredibly intentional with him to provide him with ways to work through his fears and emotions while he faces things that toddlers shouldn't have to deal with. Much of this has been gleaned from watching other heterotaxy families work with their children, and we've tweaked things to work for Ethan, so if you're a medical mama (or papa!) reading this, you'll need to tailor these suggestions to your child. But because we've come so far in helping Ethan cope, we want to share what we know in hopes that it will help other families out there as well.

My caveat with all of this would be to not expect it to work right away or necessarily at all since as we all know every kid is different. Depending on what you're facing, much of this might be irrelevant, so I've tried to break it down into sections that will hopefully make it easier to find what you need. These are techniques that we've been using with Ethan for every single procedure since he turned a year old, so it took a year and a half to really truly come to fruition, but it's never a bad idea to use these techniques, because I truly believe that caring for our kids' emotional needs is critical when it comes to helping them navigate medical issues.

The biggest thing we do is ensure that, as much as possible, there are no surprises. This seems so simple, but it's so important to keep our kids' trust, especially if they're going to be facing ongoing issues. We use real words, other than the ones that he picks for himself ('picky' instead of 'needle' for example) and try to show him equipment beforehand if possible. It's actually really funny now when nurses who don't know him come in with a blood pressure cuff and start talking about an arm hug and the 2 year old is like, That's a blood pressure, not a hug.

PREPARING FOR IV STARTS, BLOOD DRAWS OR OTHER MINOR BUT PAINFUL PROCEDURES

I am 100% against the idea of tricking a kid and then sneak attacking them with needles or catheters or what have you; all it does is scare them more down the road and breaks their trust in you. For Ethan, before every procedure, we go over 'the order.' We started when he was tiny with just single word prompts, and as he's gotten older we've been able to expand that as his vocabulary expands. So, for example for a vaccination when he was a year old, we started with picky (his word for a needle), band-aid, boobums (his word for nursing). We now use a script that's more complete, but it still has key words and phrases that he can latch on to and repeat back to us. Him knowing the order helps him feel more in control over what's going on, and while it's happening we can talk about where we are and what's next. As he's gotten older, I go over the order and then ask him if he wants to repeat it back to me to make sure he knows what the plan is. We talk through each step and discuss whether each one will hurt or not, and if something's going to hurt we talk about whether it will hurt a lot or a little and for a long time or a short time. We are very up front about this, again because we feel it's so important for him to know that he can always trust us to be honest with him.

Another huge thing for us is giving him an option to respond physically to painful procedures in a way that doesn't impede whatever it is they're doing. When he was smaller, we would encourage him to kick his feet and scream, and that gave him something physical to focus on doing that wasn't pulling his arm away. We always make sure to explain to whoever's doing the procedure how it is that he copes so they don't interfere. So, for example, if he was in a foot-kicking phase, we would make sure no one held his legs down, and if he's in a screaming phase, we tell them that he's going to scream and to not try and shush him. It's always been really important for him to have a way to have that physical reaction. As he's gotten a bit older, we give him choices of how he could react (depending on what they're doing) and he decides what he wants to do. He's also gotten to the point where we can instruct him through the procedure to change methods if he needs to, so, for example, if he's kicking too hard and it's shaking the whole scene, we can get him to suspend the kicking for a little while. (That's advanced level stuff though.)

Here's an example of what it sounds like for an IV start:

Me: Okay, Buddy, we have to go get a new IV. [Stop and allow time for him to freak out. Don't tell him not to be scared or that it's okay or that it won't hurt. We always try to validate his feelings as much as possible, and correct people in front of him if they say things like 'Big boys don't cry.' They definitely do, and this all sucks so let's not pretend it doesn't. Okay. Off that soap box.] I know this is scary for you and I know you don't want to do it. I'm so sorry. Do you want to do the order? Okay, the order is: rubber band, cleaning, picky, tape, all done. The part when they put the picky in will hurt a little bit like a pinching but the other parts don't hurt. What do you want to do? Kick your feet or scream?Ethan: I want to kick my feet and I will scream.Me: Okay, and what will you do with your hand?Ethan: I will keep it verrrrrrry still.Me: Do you want to do the order?Ethan: Yeah. Rubber band, cleaning, picky, tape, all done. Will I see my blood?Me: [Realizes I forgot to ask if they're doing labs. Find out they are] Actually, yes, after the picky part they will get some blood. And then taping. So we have to change the order. Remember, we always make our plan but sometimes the plan has to change. [This is an idea we review a lot, that we can try to anticipate but sometimes things change.] So the order will be: rubber band, cleaning, blood in the tube, tape, all done. Do you want to watch your blood go in the tube?Ethan: Yeah, I want to see it.Me: Okay, so which part will be the hurting part?Ethan: Just the picky.Me: Will it hurt a long time or a little time?Ethan: A little time.Me: Will it hurt a big bit or a small bit?Ethan: A small bit.Me: And I will tell you the order while we do it, okay?

And then we go. If he's still really resistant we choose a reward for after and talk about that, like a show to watch or a lollipop if he's allowed. So there's a lot of repetition beforehand and during, emphasizing the order of things, what will hurt and what won't, and giving time to ask questions about the different parts if he wants to. I don't prepare him until right beforehand to minimize freakouts; it takes a while to go through everything, and I've caught a few people rolling their eyes, but then they see how well he does and how still he holds and they don't roll them the next time.

PREPARING FOR SURGERY / PROCEDURES UNDER ANESTHESIA

For procedures under anesthesia we do a similar prep, but we start a little earlier to allow time for questions (since anesthesia / surgical teams don't really have time to stand around for long Q&A's while they're waiting to go into the OR). This would obviously depend on the age of the child. When it comes to surgery, he's thus far been small enough that we haven't prepped him until the morning of, but with an older kid I'd talk them through it earlier. We talk in general terms about what they'll do, answer any specific questions, and then talk about what he'll see or feel when he wakes up. And then we do an 'order' prep for whatever will happen as he goes under anesthesia. Sometimes that's us holding him to be gassed down, an IM shot of ketamine before he falls asleep and is taken back, or an oral cocktail of medications, but we do an order for that and review before they do it.

Here's an example of what I might say during surgery/anesthesia prep:

Buddy, tomorrow you are having an operation for your heart. [Take time to validate the inevitable meltdown.] You will have special medicine when they do it so you will not know what happens and nothing will hurt. [We try not to say 'you'll go to sleep' because he has so many sleeping issues to begin with that we don't want to compound it with a negative association.] First we'll go to the hospital and the doctors will give you hospital jammies. They'll put stickers on your chest so they can watch your heart beat, and then they're going to give you medicine that will make you feel tired. I will stay with you until it's time to go for your operation. When you're finished you'll have a new scar and a new bandage there, and you'll have IVs in your hands and one in your neck. You might have a tube in our throat to help you breathe. We will be with you; you won't be alone and we will make sure they give you medicine to help you not be scared and for it not to hurt. Are you scared? It's okay to be scared. Even if you're scared you're still brave. Being brave means doing things even when you're scared. We are always very careful not to tell him to try not to be scared and are intentional to correct anyone who says that to him. Telling a child not to have normal, healthy emotions is never really going to work, so we use our time to try to provide him with concrete strategies that he can use to handle those emotions rather than unsuccessfully trying to control them and winding up feeling even worse about the whole thing.

If it's a big surgery and he comes out of the OR with a breathing tube, we continue to talk him through anything that's happening to him, even when he's asleep. This is a habit left over from my time as a PICU nurse, but I figure it's best to err on the side of caution even when we think he's sedated and not hearing us, just on the off chance that he can. While they wean sedation and he's waking up still intubated it's a lot of just quietly reinforcing what's going on, what the people in the room are doing, and what the next steps will be. We try as much as possible to be his voice while he's intubated and try to give him opportunities to nod or shake his head to let us know how he's feeling using yes or no questions. This is all very specific to the kid; some wake up raring to go and that tube is out in a couple of hours, but Ethan is a slow swim to the surface every time, so we typically have a day or two with him groggy but aware and still intubated, so working through ways to cope with the harder parts of having a breathing tube (kicking his feet while they suction, for example) is certainly appropriate there.

WAYS TO HELP WITH COPING DURING HOSPITAL STAYS

A huge part of Ethan (or any child) coping in the hospital is giving choices wherever possible. We always ask which toe he wants his pulse ox probe on, which armpit for a temperature, which arm for a blood pressure, and we respect those choices. If he has multiple meds, we let him choose the order, and where possible we accommodate him if he tries to refuse. So if he says no meds we say, You have to take your meds but you can choose if you want them now or in five minutes. Which do you choose? Sometimes we get lucky and that helps because it makes him feel like he's regained a bit of the control. I literally ask for his input on every single thing that I can do that he feels like he's running the show, from the position of his pillow to the arrangement of his stuffed animals to what he wears.

We also try to bring key comfort items from home, so he has his own pillowcase and blanket, his stuffed animals and his own water cup, his white noise machine, and his own clothes wherever possible. It just helps with feeling a little more normal, and it's all way more comfortable than hospital-issue stuff. We find that stretchy, short-sleeved t-shirts a size up and soft cotton PJ pants with slippers are a great combo for getting over IVs. Another thing I've seen is taking a t-shirt a size or two up, cutting it straight down the middle of the back, and then putting in a couple Velcro squares to hold it together. It makes a make shift hospital 'gown' that's super soft and cute depending on the design.

While we're in the hospital, (and actually before any doctor appointment) we review the plan frequently; it's slightly different from the order that we talk through before a procedure, but it's also really helpful for him, mostly at bedtime. I find it helps him relax if we talk together to the night nurse before bed about the plan for the night. For example: You're going to go to sleep and the nurse will come in two times to do a blood pressure and a temperature. We will wake you up one more time to do your breathing meds and pats [chest physio when he's having respiratory issues]. That way when things are happening in the night, I can remind him of the plan and where we are in it. No surprises over here. And then we always remind him that the plan sometimes changes and give him time to express his hatred for that when it happens. Okay Buddy, that's the plan for the night, but we know that plans can change. I will let you know if it changes. Then, if the plan changes, we use that same language again. Ethan, remember how we said the plan was for no pickies tonight? Well, you have a fever so the plan changed. Now we have to do a picky so we can check your blood. I'm so sorry that the plan changed. That's hard when that happens, isn't it? I can't stress enough how important it's been for us to be really intentional about allowing him to express his anger or fear or any other negative emotion as much as we can.

FINAL THOUGHTS

I know that some of these scripts may seem pedantic, but we've found that using the same specific words and phrases over and over has been extraordinarily helpful in letting him regain a sense of control when he's facing the hard things. He knows that I will always be honest with him, so when I tell him that something won't hurt, a chest x-ray for example, he trusts me and no longer fights me when I tell him that he needs one. When emotions are out of control, the familiarity of the scripts that we use with him is something familiarhe can hold on to.

I mentioned above that one of the things we always say is that being brave doesn't mean that you're not scared. And that goes for both kids and caretakers. When all else fails, stepping away and letting someone else take over while you sob in the shower is 100% appropriate. Because sometimes it's too much, no matter how much you try to make it better.

I hope you've found at least some of this helpful, dear internet strangers walking hard roads. I'd love to hear what other families have done that's worked well for their children; please let me know in the comments, and I'll add to this post as appropriate. I'd love for this to be a great shared resource for us as we fight alongside our children.

Thursday, December 31. 2015

Sitting here on the cusp of a new year, there is too much in my heart for me to keep it there, and so I turn here, just like always, to let it overflow even though it’s been nothing but echoes and cobwebs in this place for far too long.

A year. A whole year, the first time we’ve turned over every single page on the calendar with him by our sides, and it feels monumental and important and terrifying all at once. I look back over these last nearly four hundred days, exactly two thirds of his life, and, as per usual, it looks nothing like what I expected. Somehow we’ve spent only two of them in a hospital bed, visited the ER only a few times (with a few fingers and all my toes left over if I lose count), and it just doesn’t make sense that this boy with everything wrong inside should be doing so well on the outside.

It’s a different kind of hard, having a healthy sick kid.

Don’t get me wrong. This is nothing like the hard that so many of our friends have experienced this year. It’s not the crushing, exhausting hard of sitting in a hospital, waiting for someone else‘s tragedy to offer your child hope. Not the searing, agonizing hard of walking out of that room with empty arms and an empty heart. Please hear me. I am in no way trying to compare these apples to those oranges.

But maybe this is what makes it so impossible, the apples and the oranges and never knowing which it’s going to be when you take a bite. Every time I reach for the next size of pajamas or pull things in next year’s size out of a bag of handmedowns, there’s a voice that reminds me that, despite the fact that he's almost breaking off the top of the growth charts for height and learning new words faster than I can keep track of them, this is a boy without a guarantee. I go to reorganize the closet in my front hall, and even though I haven’t touched it since April, I can’t bring myself to put my hospital ‘go bag’ anywhere else. Just in case.

And that’s why this sweetness is always laced with bitter. Knowing that, on paper, with his heart all hollowed out and his organs scattered like buckshot, my son really shouldn’t be able to be who he is in all his bright-eyed, wild-dancing glory, means that I have spent this year with one eye open, never letting myself fully relax, because for a child with half a heart, what if is always going to mean something more like when.

This is the narrow beam on which I balance, none too gracefully if I’m honest. We have been given the indescribably precious gift of time, and it’s somehow been so much more than just time marked by hands revolving on a clock face. This boy has taken my ordinary life and spun it through with something that feels like magic. I'm breathless with the beauty I can suddenly see in every last mundane, magnificent moment, and I know I just need to be grateful, but I still can't stop asking why. Why me? Why us? Why have the monsters stayed quietly in our closets and under our beds when so many other heterotaxy families are fighting tooth and nail every day to keep them at bay?

Every perfect day with my son is a day where I am achingly aware that I was not promised any of this. Every shining moment when I think my heart is going to burst, whether from watching his sister sing to him across a sunlit room or handing him to his daddy to settle in for a nap or snuggling with him in our nest of blankets before the sun comes up, every one of these is a moment that makes it harder to believe that this perfect ordinary is tenuous and breakable and so very, very fragile.

I don’t really know what I’m trying to say. Maybe it’s that I need you to understand how scared I am, even if it seems like I don’t have any reason to be. Maybe I need to give a voice to these fears that, even when things are going so right, I am somehow getting it wrong. It’s so hard to look like everyone else from the outside but to know that, at our core, we have been changed irrevocably by this boy of ours.

We don’t love the same way any more. We can’t. This is a new love, one shot through with grief and fear, reinforced with the deep, quiet realization that a life without guarantees is maybe the best kind of life after all.

So here’s to the new year. Here's to admitting that I don't really know how to mother a medically complex child who also happens to be inexplicably healthy. Here's to many more shining moments in the face of the looming darkness, to bigger shoes and life lived with wild abandon in the face of everything that could go wrong. Here's to apples and oranges and praying with everything in me that I'll have the courage to hold them both if that's what these next months have in store.

Thursday, September 3. 2015

It's been too long, hasn't it? What's that platitude? Something about long days and short months, and I didn't really believe it until all of a sudden I'm no longer the mama of babies, and both my children are counting their age in years.

But then I read back over that last sentence and the voice inside my head speaks up to correct me, just like it always does. Year. He's only one year old. You don't know whether he'll ever need the plural.

I hate that voice. It whispers to me in the dark hours when I'm frustrated, bleary-eyed and furious at yet another night with no rest. You're going to beg for these moments back when he's gone, and you're going to hate yourself for wishing them away.

It screams in my ear when I reach for next summer's size on a clearance rack. Is that discount going to be worth it if he never gets to wear it?

It clutches my heart like an iron fist when I see my children playing, when Zoe looks up from a hug with her smile as wide as the sunrise, giddy that her Boo loves her the way he does. Is this the last time this will happen? Remember it. One day that's all you'll have.

You're sitting there and you're thinking that I'm impossibly morbid, that there's no reason to be thinking like this. That I'm exaggerating. This boy is the picture of health; except for the scar on his chest you'd never know anything was wrong. Stop being such a downer. Chin up. Hope for the best.

And I do, mostly. I shove it down and cover my ears and pretend it's just not true, but no matter how hard I try to run from it, I'm stuck here with the sword hanging over my son's heart, waiting for it to fall. Maybe tonight. Maybe tomorrow. Maybe in twenty years, but even if we get the gift of that much time, it will still be nearly seven thousand more days when I had to face the truth that I curl up every night next to a boy with a time bomb ticking quietly in his chest.

This week has been a hard one in our community. A bright light went out last weekend when Mallorie went home to Jesus, and it has me reeling. We grieve with her family, knowing all too well that the monster they are facing head-on is hiding in our closet, too.

It feels like drowning, sometimes, being a mama to a medically fragile child, watching him suffer through surgeries that are considered no more than palliative, having a piece of my heart in my arms and knowing that there's no way I'm going to be able to hold on long enough. (Nothing this side of forever will ever be long enough.) Every time I think I've found a place to rest, another wave comes and knocks me back down, and I'm breathless and shaking and the water is just too deep.

I don't want it to be so deep. In my bravest moments I can summon up the courage to beg God to take me out of the flood altogether, to part these waters like the Red Sea and let us walk off into the sunset on dry land, me and my boy and a heart miraculously made whole.

But God, this God of miracles who somehow at the same time is still God when there are no miracles to be found, asks me instead to believe the hardest thing. That the answer can be no, and that all He's going to give me is a tiny little place to stand, one impossibly small foothold with the water rushing all around me. And to believe, somehow, that this doesn't mean that He loves me any less.

Be still, He whispers to me, His quiet voice drowning out the one that haunts my thoughts and silencing the roar of the waters. Be still. I am nearer to you than your panicked heart fluttering in your chest when this is all too much. I am your rock, your safe place, your solid ground.

Be still and know that this flood will not overwhelm you. There is nothing in creation that is hidden from me. Not the pain in your heart or the number of his days. Be still; I know.

And so this is where I stand. Perched on a rock in the middle of the raging river with nowhere to go but deeper into His love.

(The photo of Ethan and I was taken by Zoe. The one of the rock is by Paul Haggan.)

Tuesday, June 30. 2015

We stood next to each other under the hot sun, watching our little ones toddle around the park on chubby, brown legs. How old is he? she asked me, gesturing towards my son, who was trying to climb the wrong way up an impossibly steep slide. He'll be one on Wednesday, I told her, and she smiled. Happy birthday! she chirped, before our children veered away in different directions and we turned to follow them.

Happy birthday? Happiest birthday, really, where happy means something so much more than I could ever have dreamed three hundred and sixty five days ago.

I'm desperately trying to find the words to explain what this year has been, and the only one that seems to make any sense is that one. More.

Sitting here on my couch, the house quiet around me, I remember how I felt lying in that hospital bed a year ago, the first round of medications on board, the induction officially started, no turning back, no chickening out. We were going to meet our son, and we were going to ask him to fight for his life and none of us knew just what that was going to look like.

And now, suddenly, I'm looking back over this first impossible, incredible year, and it all I know is that it was more.

More laughter, more tears, more fear, more strength, more love. More of all of it, more than I ever thought there could be room for in one broken heart.

It's this jumble of emotion that has me tied in knots tonight while I watch the clock inch its way towards midnight, waiting for Ethan's new year to slip quietly into the place left by the old one, all at once hopeful and terrified about what's in store for us.

This boy of mine has done so much more than I ever dared hope on his first trip around the sun. Twice they sliced through the skin of his chest, sawed open his sternum, and pieced him back together with wire and glue. Five ER visits, one PICU admission, too many doctors' appointments to count, but when I look at the whole year, all I can see is this brave, determined little boy, running headlong through his milestones, intent on doing everything faster and better and, well, more than his sister ever did.

I watch him already walking on steady legs, marvel at the amount of food he manages to pack into his seemingly-bottomless stomach, feel his breath on my neck as he burrows close to me in the dark of the night, and there are moments when I can forget everything except his strength.

And then there's the rest of the time, and it's that, the everything else, that takes this particular milestone and shoots it through with an unmistakeable pain.

It's not supposed to feel like this. First birthdays are supposed to be pure celebration. Candles and cake and little babies suddenly turned into wobbly toddlers whose heads have lost that newborn smell, replaced when you weren't watching by equal parts sunshine and dirt and stale cheerios.

But when your baby has heterotaxy, when his heart has so much wrong with it that they just give up and call it complex, when nothing's as it should be and no one can give you a guarantee, well, then things are much trickier.

How do you celebrate a first when there's a very real chance it could be a last? And if it's not, if you get a second or a third or (and it feels scary even to dare type this) a thirtieth, what then? What about the ones who didn't? Don't tell me you forget them; even if you wanted to (which you don't), their memories are always there, reminding you that these hours and weeks and months, they are infinitely precious and as fragile as gossamer slipping through your fingers.

And maybe that's his gift to me.

Don't misunderstand me; I'm not saying that my son was born with a heart all hollowed out and plumbed wrong so that I can learn to seize the moment. That kind of trite platitude is grating on a good day, downright agony on the hard ones. What I am saying is that there are stopping places along this unexpected road, quiet moments when all the other voices (cardiologyurologyscheduletheappointmentdon'tforgethismeds) pause long enough that you can actually hear the One that actually matters. And it sounds something like this.

Life is a breath. Yours, your son's, all of it, and I am before it and after it and all the way through it, the Constant when everything changes, the Foundation when your feet scramble for purchase. And in the moments when you feel your own breath catching in your chest, when you can't get enough air and you feel like you're drowning under the weight of today and the fear of tomorrow, remember that I have carried you this far and that I have no intention of letting you go now. I will not abandon you to the fire or let you slip beneath the waves. You are mine. He is mine. You don't have to worry about tomorrow; I am already there.

My phone just lit up; an e-mail from someone at CHOP. Another questionnaire to complete, this one from a team I didn't know was following us, and just when I thought I couldn't be more emotional, it turns out there's yet another level, because reading Long Term Outcomes Program and realizing that my boy has officially made it far enough to be part of something like that? It feels like a dream flying in the face of this nightmare.

So I think that's what I'll do now. I'll pack away all this borrowed pain and put it back in the hands of Someone who is strong enough for it, and I'll fill out my survey, and then I'll go and climb into bed with my baby for the last few minutes I can really call him that.

Sunday, May 3. 2015

Did you know that, along with being the perfect opportunity for Star Wars references, tomorrow is Heterotaxy Syndrome Awareness Day in the great state of New Jersey (and lots of other states across the country and even a province or two)? My guess is that you didn't; heterotaxy isn't a disorder with a viral social media presence. It's not a disease featured in gut-wrenching black and white PSAs with somber voiceovers, and yet the proclamation is sitting on my kitchen table right now, signed by the governor and reminding me every time I catch sight of its shiny, golden seal that heterotaxy is very much a part of my life.

I might never have known either, not if I'd gotten any of the other ninety-nine thousand nine hundred and ninety-nine babies instead of the one little boy who fills my days and nights with his beaming smiles and his relentless need. Before that day last year (the one where everything changed), I had never even heard the term heterotaxy. I had no idea how all-encompassing, how brutal and fickle and downright terrifying it can be to live with your organs arranged like dice tossed carelessly out of a Yahtzee cup.

It's funny (in an I know there's some humor in this, but right now I just feel like the kid who tripped and dropped her ice cream and the truck is nowhere to be found kind of a way) that awareness day is now, right after a week that feels in some strange way like our true initiation into the heterotaxy world.

Yes, Ethan's had two heart surgeries. Yes, he's spent more time in emergency rooms and doctors' waiting rooms than a typical baby. Yes, he takes extra medications and gets extra vaccinations, but all this was part of the plan, as much as you can ever make a plan for a medically complex kid. We knew from the day we got his diagnosis that he'd be facing all this. But like I said, heterotaxy is cruel, and it sneaks up on you when you least expect it, and it smacks you upside the head and runs away laughing while you scramble to regain your balance.

In the grand scheme of things, this past week should really be just a blip on the radar. A fairly routine test, an afternoon spent in the ER, some slightly abnormal results, and a minor procedure coming up to hopefully fix the issue for good. It's all very simple when you look at it on paper, but this boy of mine is anything but two-dimensional black and white.

And that's why heterotaxy is so scary: because it can affect every single system, and because it does it so randomly that you never really know what's coming next.

When you have something wrong with your heart, you go to a cardiologist. Issues with intestines qualify you for GI, and problems with plumbing send you to a urologist. If your lungs aren't working right there's pulmonology, and infectious disease or immunology can get on board when your spleen is the struggle. But there aren't any doctors for heterotaxy. There's just me, a mama who is suddenly the one juggling these balls (thankful in a way I never thought possible that I don't have to worry about all of them, just some) and praying every day that I don't drop one.

I'm the one responsible for this sweet face, and for all the jumbled up mess that's hidden underneath his perfect skin. I'm the one who holds him and sings to him while he screams himself hoarse during yet another painful procedure. I'm the one who has to meet his eyes when he begs me with his cries to make it stop, and I'm the one who has to let it keep going because the price for having him here is steep.

There are days (and nights, mostly) when every fiber of my being wishes that Ethan didn't have heterotaxy. I can almost feel the strength of my longing, like a vice around my own heart, when I have to watch, helpless, as my baby takes yet another punch. But at the same time, I know that wishing away his syndrome means wishing him away, and that thought is harder to bear than any other.

I think about it sometimes, lying in the dark and listening to him breathe next to me in the wee small hours of the morning, about who he would be without the scar on his chest or the sword hanging over his head, and I don't recognize any of the million babies that walk through my waking dreams. And so I turn to curl my body tighter around his as he nestles himself closer into my side, and I know without a doubt that this perfect boy with the broken heart is exactly the one I'm supposed to be mothering.

Don't ask me to believe this when he's in the operating room or lying in a hospital bed, but right now, in this moment of calm between the storms as he stumbles around the kitchen on still-shaky but oh so determined legs, I can say with confidence that heterotaxy is a gift because it gave me Ethan. The genes that spun his heart into something almost unrecognizable sit alongside the ones that turned his eyes the deepest shade of brown and molded his lips into the perfect cupid's bow, and so I can't find it in myself to want anything else, as much as I despise what that one little twist of fate means for his life.

Tomorrow is heterotaxy syndrome awareness day. We're more aware of this disorder than we ever wanted to be and more grateful than I ever imagined possible to have him here to mark the day with us.

Want to help us raise awareness? Here are a couple ideas! Wear blue and yellow (the heterotaxy colours) tomorrow, tell someone about Ethan and explain a bit about heterotaxy, or share a graphic on Facebook or Instagram (I'll be posting some on Ethan's Facebook page), and make sure to tag it with Ethan's hashtag (#ethans_heart) or the awareness day one (#HAD2015).

You are part of his journey, you who read and cheer and pray along with us, so it's only right that you celebrate with us, too.

Friday, March 27. 2015

I got a call from the geneticist down at CHOP the other day; Phil and I submitted samples of our blood for testing back in November when Ethan went in for his Kawashima, and the results had finally come back. Of the five variants in Ethan's genes, they were pretty sure that two were unimportant. Two more were passed down from Phil, but these particular changes, if they come from just one parent, can't be at fault either. Which just left the last one.

FOXH1.
I gave it to him.
And our best guess is that it's what caused his heterotaxy.

(For the record, no one knows for sure what causes heterotaxy. This change in the FOXH1 gene, though, has been seen in other individuals with heterotaxy and CHD, and it only takes one parent passing to down to make the change significant, so all signs point in this direction. It doesn't cause CHD in everyone; I have the change and my heart is healthy, albeit sore. But until we know more, we have to assume that this is the likely culprit.)

I've eaten more than my fair share of chocolate and salted caramel ice cream while I processed all of this. It was hard enough to hear that his heart had formed wrong, that the fight ahead of him was going to be so hard. But now, a year later when I finally feel like I'm coming to terms with this new reality that we live in, to hear that it was most likely me who slipped the poison into his genetic stream? It just brings it all crashing down again.

I know that it's not my fault. I know that there's nothing I did wrong. I know. But knowing means nothing when I hold my son close and sob my bitter regret into the curve of his neck.

Because it only takes one copy for this gene to wreak havoc with your insides, it means that any child of mine has a fifty percent chance of being born with a broken heart. I look at Zoe, in all her wild-haired, stubborn glory and I can almost see the bullet whistling a hairsbreadth away from her perfect face and it leaves me breathless to know how close we could have come to starting this nightmare two and a half years sooner, to maybe never having Ethan at all.

Fifty percent is high. Far too high to risk again, and so, suddenly, this little boy who wears twelve month clothes and started taking his first, hesitant half steps yesterday, is my last baby.

He's my last baby, and I don't even know if I get to keep him, because heterotaxy is cruel; it's dangerous and cruel and fickle, and there are no guarantees that, without a shred of warning, there will be no more firsts.

I look back over the past nearly nine months, and I'm reaching with frantic hands to pull back the moments I wished away in the fog of weariness and stress, to tuck them away as insurance against an unthinkable future.

I had no idea I was packing up my last baby's newborn clothes when I sealed the boxes and sent them off to friends around the country whose little ones would wear them next. I had no idea my last baby was lifting his arms to be picked up for the first time, no idea when that first tooth cut through that it was the last time I'd see a baby of mine with that wide, gummy grin. All these firsts are suddenly lasts, too, and I can't help feeling like I should have found more energy to celebrate them.

He's nestled up against my chest as I type, just like always, and it suddenly doesn't seem like the end of the world that he will only sleep when he's touching me. Because one day he's either going to decide he doesn't want this anymore or the choice will be taken from us both, and either way I think my heart is going to break all over again.

Thursday, March 19. 2015

Today is the one year anniversary of Ethan's diagnosis. I'm shaking my head as I type this, an incredulous smile on my face as I look at how far we've come, the rest of me terrified when I think about how uncertain the road ahead of us still is.

I've never been one to celebrate anniversaries. The Husband of Joy and I never really give much thought to our wedding anniversary. Birthdays are just another day, and Hallmark holidays aren't even on our radar.

But this is different, somehow. This is so much more than a birthday. It's the day that I lost the baby I thought I was carrying and the day that I found out that I'd be getting the one who's sleeping on my chest as I type instead. It's the day that I lost my home and my community and my job and the day that I started an entirely different life on an entirely different continent than the one I'd been accustomed to.

I never thought this is what it would look like, this boy who defies the odds and grows at lightning speed, entirely unaware that he's working with half a heart, while I sit and watch in wonder. Every night when I run a bath and Zoe climbs in to 'help' her brother, I watch my children play together in the warm water with a lump in my throat because how is it even possible that we have been given this gift when a year ago I was so sure I was watching it slip through my fingers?

I just wish I could climb into the TARDIS and go back three hundred and sixty-five days, sit down next to myself in that dimly-lit room where I was so sure that my life was ending, and tell myself a thing or two. And if you're at the start of this journey, if you've just had your heart handed to you in a million jagged pieces, I want to tell you, too. I know there's a very real chance that you're not ready to hear any of it, but this, as far as I can tell, is true.

I'd tell myself, and I'm telling you, that it's okay to fall apart for a little while. I felt so guilty about that at the beginning, like I was failing this helpless baby who needed me to be strong for him, but the further I get into this journey (desperately praying every day that I'm still only at the beginning), the more I realize that emotions run so much deeper (and higher and longer and stronger and just more) when it's your child's life that's in danger.

I'd tell myself that anything I was feeling was the right thing to be feeling. That I had every right to ignore the people who told me that it was all going to be okay, to silently scream at the ones who offered meaningless platitudes, to lie and say that I was fine or tell the truth and admit that I was scared out of my mind. You don't have to be happy or sad or brave or scared just because you feel like you should; it's perfectly acceptable to be all of those things at once or none of them at all, and no one gets to tell you what's proper.

I would stretch out my hands to my shaking self and offer to carry some of the weight of lost innocence. It's shocking how massive the absence of something can be, especially something you never really paid attention to holding. But when your belief that this only happens to other people is wrenched from you in one swift, cruel moment, you'll realize pretty quickly that it leaves a hole that's black and terrifying and heavier than you can possibly imagine. And you'll feel like you can't even take another breath and getting up tomorrow morning seems about as easy as running barefoot up Everest, but there will be people who are brave enough to take off their shoes, too, and run alongside you. They are your lifelines; hold their hands and run (or walk or crawl or just sit for a while in stunned silence) together. And even then it might feel like it's too much, but there is One who walked through the inky darkness of the valley before you. His footprints are still there, marking out a way through the rough ground. Cling to Him; He will never leave you alone in that awful place, not for a single beat of your wounded heart.

You know the darkness won't last forever, don't you? Impossible as it may seem, dawn follows dusk, winter gives way to spring, and you will find your joy again. It won't look exactly like it used to, and it will never feel quite the same; it'll always be laced with that bittersweet knowledge that you are other people now, the ones without a guarantee, but that won't make it any less beautiful. Just like the pain, your joy will be so much more now. Every single first is one more thing that wasn't promised and that makes the smiles and the coos and the crawls and all the myriad other things that you suddenly find yourself counting as milestones infinitely more precious.

I'd want to tell myself, to tell you, that your life is not over. You're suffocating under the staggering burden that's just been forced on you, and it probably feels like there's no way that your life will ever be anything more than doctors' waiting rooms and prescription bottles and hard chairs pulled up to ICU bedsides, and maybe we've just gotten lucky so far, but it couldn't be further from the truth. I had spent the six years before Ethan's diagnosis living my dream, sailing from port to port on my floating home and drinking in the incredible experience of working on that ship. Heterotaxy took all that away from me, and I spent a long time feeling insanely bitter about it. I still wrestle with it, especially on the days when every little part of me longs for the easy community down in the wards but I'm stuck in the house with a baby who makes me nervous just going to Target because of all the germs I might be exposing him to.

Your life will be different. There's no sense in denying that. It will be different and it will be harder and it will be lonelier and so much more complicated, but I want to throw my arms around myself, the one weeping in the dark a year ago, and I want to throw them around you and tell you that the best is yet to come. You are going to learn to love with a fire that burns away everything that doesn't matter and what's left is going to be perfect (for your new, completely unorthodox definition of that word).

I've travelled the circumference of the globe, explored more than thirty countries, but this boy with the broken heart? He will always and forever be my greatest adventure.

Wednesday, February 11. 2015

I'm sitting here in the dark, rocking a congested baby to sleep for his last nap of the day while stomping feet and laughter echo up from downstairs where my husband and daughter are playing. Over the steady whoosh of the white noise playing on my iPhone, I'm listening to make sure he's not wheezing, and I hold my phone up to his face to check the colour around his mouth every few minutes since I can tell he's having a little trouble nursing and breathing at the same time. I consider abandoning the nap to go downstairs and check his oxygen levels but then I remember that the crying that will ensue will make him desaturate quicker than anything else, so I carefully reposition him and in the darkness I breathe yet another prayer for his breath and this, somehow, is my new life.

A year ago today I was living on board the world's largest non-governmental hospital ship along with nearly four hundred other volunteers from more than thirty countries around the world. The Africa Mercy was docked in Pointe Noire, Congo, where the crew was busy providing free surgeries, dental and eye care, and healthcare development to the Congolese people. I was a primary caregiver, the ship's official designation for a stay at home mom, and three mornings a week while my toddler daughter was in nursery with her little friends I would make my way down three flights of stairs to the hospital deck where I would meet with post-operative cleft patients to do speech therapy, a skill I'd acquired during my pre-baby days as the nursing team leader for maxillofacial surgery.

My days revolved around the schedule in the dining room where we all ate our meals together, my weeks were punctuated by Thursday night community gatherings and dusty Wednesday morning walks to the market, and every year saw our ship sailing into a new port along the coast of West Africa where we dropped anchor and opened our doors to the hundreds and hundreds of people who found the courage to make the long walk up the gangway and down to the green floors on deck three where they walked into the operating rooms and had pieces of their lives rebuilt.

My maternity leave was supposed to be over eight weeks after Ethan was born. Eight weeks and a round of shots and a passport and we'd be on our way back to our big white ship and our tiny cabin with all the windows and a life that made all the sense in the world.

Instead we were handed a piece of paper with the drawing of his heart and the sudden, terrifying knowledge that we were about to start over with nothing but what we'd managed to pack into two suitcases each. I was thirty years old and had never lived on my own before, and yet here I was, poised to do just that with a husband who couldn't work because he didn't have a green card (why bother getting one, we'd thought, when we'll be on the ship forever and then move to Canada?), a toddler who refused to eat because there weren't enough people in the room, a couple of boxes of stuff in my parents' attic, and an unborn baby with a future hanging balanced on the razor's edge.

Everyone who learns that their child has congenital heart defects steps into a new life, but for most people that life bears at least a passing resemblance to the old one. When we learned that Ethan was going to be one of the one in a hundred with heart defects and one of four in a million (according to some stats) with heterotaxy syndrome, it meant that everything had changed in that single, blinding instant.

Instead of two seasons, rainy and dry, both stiflingly hot, I now live in a world with four. I just realized yesterday, most of the way through this particular season, that I don't actually own winter boots.

Instead of walking into the dining room and serving myself food that someone else prepared, eating and stacking my dishes for someone else to wash I now plan my weekly menu and clip coupons and shop for groceries and cook my meals and at least I've got the husband of joy to do the dishes after dinner because by that point I'm pretty much spent. My house isn't connected to the houses of my four hundred best friends any more; I can go entire days where I converse only with a two year old.

I exchanged my floating hospital for another much more stationary one and an endless parade of doctors' offices and waiting rooms, and instead of overseeing a bustling ward packed elbow to elbow with beautiful West African faces in various stages of repair there's just one face that looks up at me from the bed, eyes wide as he wonders why I'm letting them do this to him again and please, Mama, just make it stop.

The house is quiet around me as I type this, dinner and baths and bedtime having all come and gone before I could finish my thoughts. I can hear the clock ticking and the faint hum of a car as it passes out on the main road but even now, nearly a year later, my ears are searching for the hum of the generators and the scrape of the chairs overhead as the patients come outside for some fresh air in the afternoon and without those sounds I still feel a little bit lost.

It makes no sense that the boy who rocked my world would be the one to steady me, but when I look down at the baby sleeping in my arms, the boy who has taken our lives by storm and laughed in the face of every statistic, the one whose heart, against all odds, beats next to mine, suddenly my feet seem a little more sure, the ground a little more solid underneath me.

If ever there was a reason to start over, this is it right here.

(The photo of me seeing patients on Selection Day was taken by Dana Perino, if I recall correctly.)

Saturday, February 7. 2015

It's CHD Awareness Week, and one of the challenges floating around the web is to post a picture each day this week for a certain prompt. Today's is diagnosis and even though a picture is supposed to be worth a thousand words, once I really started thinking back to that day I realized that I actually needed to write them out instead of just post a photo from that day, almost a year ago now.

I brought my sister with me. Of course I did; my husband was across an ocean in England and I needed someone to be there to share in the excitement of finally finding out who was inside me. I'm the sister with a medical background, so I was happily explaining everything that was happening, pointing out the things I recognized on the screen and gleefully reminding the tech that we didn't actually want to know the gender; I wanted her to seal it in an envelope for Phil and I to open 'together' over Skype later. Clearly the only real surprise at that ultrasound is supposed to be whether you're going to be using big sister's handmedowns or heading out to buy things that are a little less pink.

The tech didn't answer, just nodded, her eyes glued to the screen. I guess I'll never know whether she was just a quiet person or whether she didn't trust herself to speak as the images unfolded in front of her and we sat there, not knowing that these were the last few minutes of my not-knowing and that everything was about to be so different.

The room fell silent as I ran out of things to talk about. Ethan's heart danced on the screen in front of us, sliding in and out of view as the she inspected it from every possible angle and I finally started to realize that something was very, very wrong. I turned to my sister, the words sticking in my throat like poison, and voiced my growing fear.

If she leaves and says she's going to look over the images with the doctor, I told her, it means that there's a problem. It's not good. She shouldn't be looking at the heart for this long. Something's not right.

And so when the tech put away her probe and didn't meet my eyes while she told me that the doctor was going to have to see the pictures, the first tears came. There were more when I asked the doctor, kind and efficient, whether they just couldn't see what they needed to see or if they thought there was a problem, and she was good enough to put me out of my misery right away (or maybe into it, really) when she laid a soft hand on my leg and told me that, yes, there was something wrong.

They let me get up, pointed us across the hall to an office where I sat next to my sister and everything came crashing down around me. This will be hard to hear, the doctor said, and it was like I was losing my footing on the edge of a cliff with the wind howling through my soul and the waves crashing on the rocks a thousand feet below.

My baby sister held me while I wailed, while I tried to compose myself enough to listen to the list of defects and understand what the next step was, while I wailed again because there is nothing, nothing, nothing that can prepare you for the moment when everything changes.

I've spent a lot of this afternoon thinking back to that day, letting myself crack open the tightly-sealed box where I usually keep those feelings. The day you get a diagnosis is a day that never leaves you; how can it, when it marks the end of life as you knew it and ushers you into an entirely new reality? The day you get the diagnosis is the last day of your innocence and the first day of the fight, and as impossible as it seems in the moment, you will somehow be able to find your feet in this new world.

I thought that Ethan's diagnosis was the end of everything, and in some ways I guess it was. It was the end of my perfect pregnancy and the end of the life we'd been living for six years (complex congenital heart defects and a ship off the coast of West Africa don't really mix). It was the end of being able to pretend that I had it all under control, the end of not worrying about every little cry and not needing to scrutinize my baby's colour with every little cough. (It took me an extra few hours to get this written, in fact, between the calls to Ethan's pediatrician and cardiologist and the waiting to see what would happen and whether or not I'd be taking a late-night trip to the ER after he spiked a random fever.)

But that day was the beginning of so much more than all that, as cliched as it feels to type that out and as much as it sometimes feels like I'm just trying to convince myself that it's true.

The day of Ethan's diagnosis was the day I stared my greatest fear straight in the face and realized that, somehow, I could still go on. It was the beginning of my life as a heart mama, a life that soon had me discovering a kinship with other women around the world who fight for their babies the way I fight for mine and are quick to offer humour and advice and a shoulder to cry on in equal parts. It was the day I found out that I am both so much more fragile and infinitely stronger than I thought possible, and knowing that has given me the confidence to be the one who speaks up for him, who fights for him to get the best care possible, who holds it together all the way until they roll him through those double doors.

If Ethan's heart had formed correctly, mine wouldn't be shaped the way it is today, all broken and patched and reinforced with that special kind of steel that's only to be found beside hospital beds and in waiting rooms and on the other side of endless, worry-filled nights.

His diagnosis stripped me of everything that didn't matter and left me holding nothing but a love that had suddenly grown past anything I recognized, a love that was all at once fierce and stubborn and desperate and so much more powerful than I ever thought possible.

Wednesday, December 3. 2014

At morning rounds last Sunday, the resident following Ethan's case took a deep breath and listed his heart defects and his history up until now, stumbling a bit over some of the unfamiliar words. (Kawashima isn't really something most people need to pronounce on a daily basis.) She ran through the course of this surgery, quickly glossing over bypass time and cross clamp time in her hurry to get to the day's plan, which would be to send us home.

I should have been jumping for joy, but I stood in the hallway, rooted to my spot on the tile floor as everything went quiet around me and all I could hear was one phrase echoing in my head.

Nineteen minutes of deep hypothermic cardiac arrest.

Nineteen minutes.

My son's heart stopped for nineteen minutes two weeks ago and he's sleeping in the Boba right now, those four days in the hospital already fading away and feeling more like the vague memory of a nightmare. Except for this, those nineteen minutes and the fresh scar down his chest, I might as well have imagined the whole thing.

Maybe this is a gift, along with so many others, this forgetting and blocking out and not being able to remember how it felt when he stared up at me, shrieking and begging me with those huge eyes to just make it stop. Not exactly, anyway, though the dull ache around my heart left after it shatters all over again in those moments will, I think, never really go away.

I am a heart mama. Two surgeries down, at least one to go, syringes and stethoscopes joining the usual avalanche of baby gear, and it's one foot in front of the other and praying I make it through because this sweet face needs me forever and always.

People tell me all the time that I'm special, that I was chosen for this, that I'm strong. Sitting here on the yoga ball for the hundredth nap in a row (I've been working on this post for almost a week now) and silently begging my baby to stay asleep long enough for me to finally eat something and spill a few thoughts out onto this virtual paper, though, I feel anything but that.

I know why people say it. From the outside looking in, that's exactly what it looks like. I've been on the that side, the other side, and I've looked at the mamas of the children under my care with something akin to awe. The way they spend hours and days and weeks at the side of hospital beds, unkempt and disheveled and always, always ready to spring into action the second the baby stirs. The long lists of diagnoses and medications and symptoms that they carry in their heads and can produce with no hesitation while the doctor fumbles with her papers to find the information. The way they push and push again, demanding good better best care for that helpless baby, all swallowed up by the giant crib around him.

Those mamas were my heroes. And then, without warning, I became one, and now I'm learning the truth behind those steely eyes.

You call it strength, but it's really desperation. The baby hasn't slept in a week and neither have I but I'm the one that he loves most in the entire world, so I have to stay awake because he needs me and maybe, just maybe, if I rock him for five ten fifteen a hundred more minutes he'll finally rest and then maybe I can too.

You call it strength, but it's more like fear. Fear that grips my chest in its iron fist and goads me into action when the numbers on the thermometer won't stop rising and I'm running through those lists in my head as I mentally pack a hospital bag because I'll need to know all of it, need to be able to explain every little nuance of my son's scattered body if those numbers keep climbing and send us straight to the emergency room do not pass go do not collect two hundred dollars.

You call it strength, but I call it bravery, or whatever bravery should really be called when you're not sure from one moment to the next whether or not you're going to be able to keep from crying long enough to choke out the song your baby needs you to sing over and over and over again so he can finally stop screaming in pain. It's not that I'm a coward; it's just that mothering a baby like this so much harder than I'd ever imagined, and seeing that little piece of myself hurting is almost enough to make me want to run for the hills and hide somewhere all this can't find me, to pretend that everything is going to be okay when I know full well that it might not be.

So maybe that's what strength is. Equal parts fear and desperation and just enough courage to throw caution to the wind and love in the face of everything that could go wrong because when all this is over, whenever that day comes, that's the only thing that will have mattered.

Sunday, November 16. 2014

I feel like I've been doing nothing but throwing the darker pieces of my heart at you here recently, and I am so grateful for the way that you have carried them when they were too heavy for me. I want to share the lighter moments, too, but it's hard when I spend my time balanced on the razor's edge between joy and grief, soaking up every last smile and coo and shriek of laughter while the specter of surgery peers over my shoulder, casting its too-familiar shadow over even the most perfect moments.

I remember the feeling so well from the days leading up to Ethan's birth; wanting desperately to enjoy every second I had with him because each of those seconds were infinitely precious, but knowing that hard times were rushing towards us at an impossible speed and never being quite sure how to carry both those truths in one set of shaking hands.

It's all happening again. The shaking hands and the shaking heart and less than three days until they stop his heart and hope it starts again when they're finished. He's an entirely different baby this time around; he's twice the size and has at least twenty times the personality, and the PICU nurse side of me knows that he's not going to be the easiest patient (and that's putting it mildly), and so there's all that in the mix, too.

Last time we watched him roll away, a woman in green pushing the bed carrying his tiny, bundled self, I didn't know him. Not really, anyway, or at least not like I know him now, and the gift of these past four months is going to make it so much harder to close my hand around the pen when I sign the consent form and open it again when I let them walk away with him on Wednesday.

Last time, all I knew about him was that his fingers and toes were ridiculously long, that he loved his mama's milk and that he loved to hold my hand. Beyond that, he was still a stranger.

Not anymore.

I know this boy better than I know myself, now. I know how hot he likes his bath, how he likes to be held when he nurses, and the unmistakable face he makes when he's about to blow up his diaper. I know which toys he likes and which ones he thinks are boring, which soothers he'll take and which ones he'll spit right out. I know the precise mix of white noise he prefers when he sleeps and exactly how he likes to be swaddled when I tuck him into his swing at night. I know the spot under his arm where I need to stick my nose if I want him to laugh, and I could trace the shape of his scar with my eyes shut tight.

I have flashbacks more often these days, suffocating moments when, without warning, I'm reliving the day of his diagnosis, and the terror and anguish I felt sitting in that office with my heart shattered on the ground come rushing back full force. It can be the middle of a sunny afternoon and suddenly it's that first night all over again, the darkest one I've ever lived through and I'm so, so afraid that I'll never even get to meet my baby.

But then I feel him squirm against my chest as he wakes up or I catch his grin from across the room as he stares at me with adoring eyes, and all that fades away and is replaced with the truth that has been proving itself again and again over these past months, the ones that no one could promise us.

You didn't know if you'd get even a single day with him, and you've already had a hundred and thirty-eight. You didn't let yourself believe that you'd have time to really know this boy, and yet here you are, the seasons set to change for the third time since you found out, this gift of time I've given you a far richer one than you dared hope.

More than you can ask or imagine. So much more.

So this is what I'll carry with me, the things I'll hold onto in his place while he's on the table on Wednesday. The face he makes when he stretches and the way his whole face lights up when he sees me in the morning. The way he twists his entire body to find his daddy when he hears him across the room or laughs when his sister blows raspberries on his tummy. His determined little grunts when he's working on something new and his out-of-breath little grin when he finally masters it. The way he smiles up at me when he's nursing and the feeling of his body relaxing into my arms when he finally falls asleep.

I can't promise that I'll manage to escape the fear and uncertainty completely, but my heart is so full of all this love that there shouldn't be much room for them.

(I probably won't be updating here much over the coming days since my computer doesn't seem to work on the network down at CHOP, so please check Ethan's Facebook page for updates. I don't think you need to have an account to see the page.)

Just a note to add that I did something silly while approving comments and getting rid of spam, and I think I deleted a couple of your real ones by accident. If you don't see your comment, can you please send it again and I promise I won't be such a scatterbrain this time? My tech support (aka big brother) restored some of them from a backup, but I think there were a couple more that didn't show up again. Whoops!

Friday, November 7. 2014

I feel paralyzed right now, weighed down by the length of time stretching between my last words and these ones, unsure of how on earth I'm supposed to choose the right ones now that my fingers are finally brave enough to type again. It's almost two months to the day since I shouted from the rooftops that I was going to trust God in all this, and I suppose it's only fair to let you know that I'm not sure I've kept that promise terribly well.

It turns out it's not easy living with the sword of Damocles dangling over your head, especially when you don't know exactly what the sword even looks like. It's tiring enough to have small children; you're in a constant state of high alert, making sure the toddler isn't getting her hands on something sharp or falling into the toilet or coloring on the table while simultaneously running through that hungrywetdirtytiredalloftheabove checklist in your head while you try in vain to comfort a screaming baby who is resisting all your best efforts.

That would be bad enough. But our checklist has one more possibility on it this time, an option that makes the way I paid attention to Zoe's needs look like neglect compared to how on-point I need to be during every hour of every day with Ethan.

Hungry.
Wet.
Tired.
Dirty.

Heart failure.

It's layered into every thought I have, lurking in the shadows when everything is running smoothly and taunting me to my face as I watch his lips turn blue when he cries. He might just be having an off day, or maybe his shunt is failing. Maybe this is it.

I'm not trying to imply that he's been struggling; most of his days are good ones. Not just good; incredible. He's been remarkably healthy given the state of his insides, and we've been overjoyed to watch him grow and learn and plow through milestones, holding his own with any heart-healthy baby his age. But even the good times are coloured by the knowledge that in less than two weeks he'll be lying sedated on a table in the operating room while they open up his chest again and try to bring some order into the jumble of his heart.

People frequently ask me whether this next surgery will fix things, whether he'll be okay afterwards, and it's the hardest thing in the world when I have to say no. It's written on the top of the summary from our last cardiology visit, black and white and a knife in my gut.

Stage two palliation scheduled for November 19th.

Palliative. Alleviating a problem without dealing with the underlying cause. Because there's nothing they can do to make this better, and the stark truth, the one that has me staring up at the dark ceiling at night, biting my tongue to keep from screaming as the tears soak my pillow, is that I will outlive my son. There is nothing they can do to fix him, just a series of stopgap measures that will buy us more time.

We all know that our children aren't really ours. We talk blithely of God having given them to us for a season, but we fully expect that season to stretch blissfully on and on, casting its mantle of love over our sunset years until finally we die and they carry on the family name and everything is as it should be.

I don't let myself think about it often, because it nearly destroys me every time I'm faced with it, but this baby sleeping in my arms, his soft cheek pressed up against my chest and his breath warm against my skin? This baby whose every tiny achievement I celebrate as if he were the first baby in all of history? This baby carries in his chest a death sentence.

Not today. Not tomorrow. But sometime down the road, barring the miracle that I can barely bring myself to ask for, terrified as I am to be turned down yet again, his body just won't be able to keep going. His heart will fail or an infection will overwhelm him or one of a hundred horrible, random complications that come along with this syndrome will creep up and snatch him from us.

And the truth is that I don't know how to do this. I don't know what to do with the ridiculous, overwhelming love that I feel for him when I don't know how much longer I get to have him here with me. Maybe this is all just me reacting to the looming prospect of surgery, but I find myself on the verge of tears all day long, even the happiest moments shot through with this thread of anticipated grief.

How is it possible that this face belongs to a body put together so wrong? And how is is possible to keep going every single day, pretending that everything's okay for the sake of the toddler who kisses her brother's chest and looks up at me with huge eyes and tells me that it's all better now, sure as she is that her kisses can fix any hurt?

The answers, I suppose, are found when I give in, let all this break me and bring me to my knees. It's just that the answers aren't really what I want to hear, not if I'm being honest, because they promise a Companion in pain instead of the avoidance if it altogether that I so desperately long for.

I will never leave you or forsake you.
This fire may burn you, and I don't promise that there will be no scars, but you will walk out the other side.
You might feel like you're drowning in this flood, but I will always pull you out of the deep waters before they close over your face.
I know each hair on his head, each day of his life, each beat of his broken heart and each frantic cry of yours.

Sparrows and lilies and babies and you; I hold it all in the palm of My hand, and My hands are more than strong enough for all of this.

Tuesday, September 9. 2014

We just got back from another cardiology appointment. All of this is starting to feel normal. Pulling up to hospitals and filling out forms and using every trick in my book to keep the baby happy so they can just get one usable blood pressure (we failed) or a clear image on an echo (thankfully this one was a success). Three hours gone in the blink of an eye and then we sit and talk with the doctor and somehow I still managed to be blindsided when she starts talking about his heart.

Why is it so hard to hear that his heart is put together so wrong? It's been six months since we found out; you'd think I'd be used to it by now, especially after seeing it beating away on the screen in the darkened room where I lie curled up next to my son, praying that I'll be enough comfort for him to be able to sleep through it.

But it's still suddenly hard to breathe when she starts talking, using words like stenotic and smaller and November.

November.

He's going on the schedule for November, and we still don't know exactly what they're going to do but I can't pretend any more that my boy is fine.

We've been in such a blissful, beautiful honeymoon stage. Granted, there are things that remind me daily that he's not your average newborn. I weigh him and check his oxygen saturations, I text his stats to his team and massage his scar every morning before we come upstairs for meds. We don't take him out in public and no one really comes here, either, but for the most part our day-to-day life feels so normal right now.

Except that it's not. And it's brutal to be reminded that underneath his perfect exterior is a tiny ticking time bomb, a heart that's only going to work for a few more weeks before it needs to be repaired again.

I've seen it written that being a mother is choosing forever to have a piece of your heart walking around outside of your body. But what if that piece of your heart got damaged when it broke off? What if you have to live with the very real possibility that forever isn't going to be very long at all?

My head is all over the place right now. I know that he needs more surgery if he's going to have a chance at life, but the thought of handing him over again, this time for something far more complicated, is almost more than I can bear. And there are still two more months to go before it will actually happen (provided he stays stable); am I going to live with this rock in my gut until then, the tears threatening just below the surface and a throat so tight I can barely swallow?

These are the days I'm just not sure I'm cut out for this. If just the mention of a surgery schedule with my son's name on it is enough to make me feel like this, how am I actually going to watch them wheel him through the doors?

I just need to trust that the One who has brought us this far will continue to go before us in these days, too. It's so much easier to type that than to actually live it, but even the strongest faith has to start somewhere. I'm not brave enough to surrender my baby to His plan, not ready to admit how scared I am about what's coming. But I can choke out the truth that I cling to, my salvation as I drown in all this uncertainty. He is faithful, He loves my boy, and He loves me. None of this is happening outside the shelter of His strong hand. Nothing ever will.

I will speak these words until I believe them. This is my mustard seed today.

Tuesday, August 19. 2014

I've been looking back over old posts on Instagram and Facebook and here on the blog, taking a moment while Ethan is asleep to see his journey unfold all at once instead of step by heart-wrenching step like it did in real time.

I'm kind of blown away.

From those first, horrible, dark days after his diagnosis to the beauty of his birth to this moment right here with him sleeping quietly all nestled up against me in the wrap, his short life has been a testament to God's faithfulness, the kind that you want to shout from the rooftops. The kind that's rooted in love and is going to last forever. That kind.

It makes sense to be grateful when faced with all this. I can't imagine any other response being more appropriate, and so I've been sharing all our joys with you, all the bright, shining moments that make up for all the sleepless nights, and so when I look at everything all at once, it looks pretty near perfect.

Except it's not.

Don't panic; nothing's wrong with Ethan. We just had a cardiology visit yesterday, and his heart is looking great. In fact, he's the only baby under his doctor's care who's had his type of surgery and isn't relying on diuretic medications afterwards, and he's consistently gaining more weight than they expect him to despite also being one of the only exclusively breastfed babies with his condition. So he's more than great.

But this whole newborn thing? It's not great. It's hard and tiring and grindingly relentless, and it feels like a betrayal to admit it out loud, but I'm not really a huge fan of it this time around. (Not really a huge fan is probably an understatement, but it's difficult enough to bring myself to type any of these words, so work with me here.)

Mothering a newborn is all-consuming. There are very few moments in the day when that baby isn't physically attached to you, especially if you scored one of the high-needs-and-also-breastfed ones. I mean, maybe you got lucky and your baby is laid back and sleeps anywhere and gives you long stretches to yourself at night. I had one of those with Zoe; she was cuddly and happy and would just sit in her bouncy seat and grin at us while we ate dinner. But I was still exhausted, because when that baby is born, all of a sudden you're not alone in your own head. From the moment they cut that cord, your world is taken over by a tiny little stranger who can't tell you what's wrong except by yelling at you. And even if that sort of thing only happens for a few minutes every day, it's still going to be hard, because you're spending the rest of the time anticipating the next need, an unconscious loop of hungrytiredgassywetdirtyhotcold? running on endless repeat in the back of your newly-crowded mind.

And then there are the needy ones. The ones who come out screaming and don't really stop or sleep unless you're holding them in a very specific way and rocking them just right and please no one better look at them funny or it all falls apart and you're back to square one. The ones who cry for no reason and every reason and there's absolutely no difference between one scream and the next, so if your mother's cousin's uncle doesn't stop telling you that you'll get to know what they want by their cry soon enough, you're probably going to throw him off a bridge. (The mother's cousin's uncle, not the baby.)

I got one of those this time. Don't believe me? Given those pictures up there, I can see why you wouldn't. As far as the internet is concerned, my kid is either happy and smiling or just hanging out looking around quietly; those are the moments I've shared with you because those are the moments I love, the ones I want to remember and the ones I hold on to during the rest of the time. The reality is something more like this, and this is one of the calmer fits; I almost never stop to take pictures of him crying because there's not really time for that when it takes everything I've got to get him to stop turning grey:

Except I don't really talk about it, because there's a voice in the back of my mind (when I can hear it over the crying) that tells me that I don't get to be tired. I don't get to be worn out or frustrated, and I sure as heck don't get to wish these hard hours away, because just a few months ago I was doing nothing but begging to have them at all.

I've decided that voice is a liar.

It doesn't matter how much you wanted your child, how long you tried to conceive or how desperately you prayed for his life to be spared: it's still okay to admit that you're not loving every second of the life that you'd give yours for in a single heartbeat.

There's a very real feeling out there (and by out there I mostly mean on BabyCenter, although I'm fairly confident that the mommy blog world as a whole doesn't do much to quell this particular notion) that the only appropriate response to having your life completely taken over by a tiny tyrant is nonstop happiness. Go spend a minute on Pinterest if you don't believe me.

It feels like it's not okay to complain about the aches and pains of pregnancy because there are so many women who would give anything to be able to conceive. Once your baby is born, you can't speak out the drudgery of the newborn days because some mamas had to let their babies go too soon. If your baby has special needs, there's always another one whose needs are more special than his, and on and on it goes. There will always be someone worse off than you, so you need to suck it up, paste on a smile and feel grateful every moment of every day.

Is that sounding ridiculous to anyone else, or is it just me? What's going on here? Are we afraid that we're going to be judged unworthy by all the other mothers if we're not dancing through life with a permanent smile on our faces?

I think it's time to admit that even the most perfect baby isn't actually perfect. The middle of the night, holding a screaming child and bouncing zombie-like on an exercise ball for the forty-fifth hour that day is a lonely place to be, and if there's one thing that the past years in West Africa taught me, it's that despite the fact that every mama's journey is her own, we aren't meant to walk this road alone.

So stop pretending it's all okay. Yes, I want to see the beautiful moments in your days. I want to laugh and rejoice with you when your kids say adorable things and finally start smiling and sleep for more than an hour at a time. But I also want to know about the rest of it, the parts that are hard for you, no matter what hard looks like in your house or how trivial it might seem to someone who's on a different path. I want to hear about the frustration and the exhaustion and the terrifying moments when you think you've made the biggest mistake of your life. And you need to speak up.

Because in those moments when you're feeling the weakest, I can guarantee you that there will be another mama out there, somewhere, who's having a strong day, one with plenty of love to spare just waiting to help lead you out of the darkness. But she won't know it's time to take your hand unless you tell her.

So tell her. Speak up. Stop walking and rocking and yoga ball bouncing alone. We're all in this together, every last ecstatic, exhausted, milk-stained mama in the world. And we could all use a hand sometimes.

Sunday, August 10. 2014

The four of us were sitting around the table tonight, enjoying Chinese takeout. (Well, to be totally accurate, Phil, Zoe and I were enjoying it; Ethan was asleep in the wrap where he spends the majority of the daylight hours.) I finished my pork fried rice and cracked open my fortune cookie, expecting some cheesy platitude that Phil and I would laugh over before I handed the stale crumbs over to my waiting daughter.

Instead that tiny slip of paper hit me like a fist in my throat, and my eyes clouded up before I could finish reading.

It's the quote we have printed on the back of the sweatshirts that all the nurses ordered the year we were docked in Cotonou. Back when I lived on a ship, when I spent my days taking care of patients in a floating hospital, back when my life made what felt like perfect sense.

On Friday, that ship will throw off her mooring lines and sail for Benin again, but the closest I'll get to being there will be in the photos my friends post to their Facebook walls, the sunsets and worship on the bow and videos of dolphins and flying fish. And I'll watch it all from the chair in my parents' living room where I sit nursing my son while my daughter plays on the floor (or, more likely, tries to escape through the open door), and I'm still not sure how it all happened, how it all changed so quickly.

When we left the ship in March for what we assumed would be a routine maternity leave, there was a moment right before we locked our door when Phil and I stood in the middle of our empty cabin and he said, It feels like we're never coming back.

I laughed at him and took one last look around, already imagining how it would be in six months when we came back with our new baby, how nice everything would look once the carpets had been replaced with laminate, how we'd rearrange our lives to fit the new boxes of diapers and the extra booster seat and all the love he'd bring with him.

Because God had called us, you see. He'd pulled us from our lives in North America and sent us to the ship and of course we'd be there until we were ready to leave, because no one gets called off the mission field, right?

Wrong.

It turns out that the life I had planned for myself was very different from the one God has in store, and as the ship gets ready to sail I'm finally having to come to terms with the fact that that incredible, heart-changing chapter is closed. I won't be on the ship when it leaves port, won't be losing sight of shore any time soon, and tonight's fortune cookie seemed to throw that awful truth right in my face.

I'm not going back.

Not as long as this boy is part of our story, and dear God, please let that be forever, but even as I type that I realize that I'm doing it all over again. I'm clinging to a life I so desperately want and ignoring the truth that should be so evident by now.

It's not about what I want. It's not about what I need or even what I think I need. This life? My life? It's not really mine at all. I don't get to choose what it will look like.

When I quit my job and moved into a six-berth cabin on a hospital ship docked in Liberia, I was pretty sure I was giving my life to God. And in the months and years that followed, through all the joys and all the heartbreaks, my prayer was always the same. Use me. Take my life and use me. Do what you want with me; I'm yours.

What I didn't realize was that underneath those words (spoken as they were with heartfelt belief and utter sincerity) was an unconscious and firmly-rooted need to have at least some shred of control. Whether that meant knowing what port we sailed to next marking out a mental timeline that had us settling back on land when the future hypothetical kids hit middle school, I was okay with the fact that God had called me to the mission field because I still had some kind of a hazy idea of what came next. I never actually gave everything up.

I'm not saying that's why my son's insides rotated wrong in those early days. I don't for a second believe that God did this to him to teach me some kind of lesson about how I need to relinquish my need for control or that He made us leave the ship because we loved it too much or anything like that. My God is not one who arbitrarily hands out punishment or changes the course of our lives on a whim.

He is a God who has known the end of everything since before there was anything at all, one who works everything together for good, even the hardest things. Things like my little boy's broken heart and the uncertainty of the future stretching out in front of him, a life filled with hospital stays and surgeries and a body that will never work quite right. Like the pain I feel (nothing compared to my son's, but somehow just as real) every time another friend walks up the gangway and shouts that they're home while I try to organize my life in my parents' basement and wonder for the thousandth time why we had to leave just when we thought we were right in the center of His plan for us.

There will be lots of days when I feel like I'm drowning in all this, lost at sea with no hope of making it to shore; I'm not going to come to terms with all this overnight. I won't wake up in the morning (or in an hour or two if Ethan's current feeding habits hold true) totally understanding God's plan and magically feeling completely at peace with this massive paradigm shift.

I will wake up knowing that it's going to be okay. That okay might not look like anything I've ever known, and so I might not recognize it right away, but that when God says He'll make everything good, that's exactly what He means.

And let's be honest. As amazing as life on a ship was, this right here isn't half bad either.

welcome!

I'm Ali, wife to Phil and mama to Zoe and Ethan. We spent the past 6 years living and working with Mercy Ships on board the world's largest non-governmental hospital ship, the M/V Africa Mercy, as nurse, electrician, and ship's baby respectively. On board the ship, we worked with a team of volunteers from over thirty different countries, providing free surgical care and healthcare development, bringing hope and healing to the forgotten poor in West and Central Africa.

In March of 2014, during a routine ultrasound, we found out that our son, Ethan, has a four-in-a-million condition known as heterotaxy. He has major congenital heart defects, and had his first open heart surgery before he was a week old. Although the future for our son and our family is uncertain, we are more than ever convinced that God will be faithful to lead and guide us through this new season the same way He has in the past.(I've had a big problem with spam comments around here and literally don't have the time to sort through all of them, so comments on all entries before Ethan's story began have been turned off to keep the numbers down. I moderate all comments on new entries, so don't worry if yours doesn't show up right away. If it won't let you post, please e-mail me at alirae[at]quist[dot]ca. I love hearing from you!)

ali (that's me!)

phil

zoe rae

ethan vikash

ethan's story

Due on the Fourth of July and born on Canada Day, Ethan has given us so much to celebrate. He had his first surgery when he was six days old and amazed the doctors by being ready to go home before he reached the two week mark. Heterotaxy can affect every organ system, but so far Ethan seems to have escaped some of the common complications. While his heart has a number of complex defects, it's working well so far. His intestines actually formed correctly, and his lungs and kidneys are all functioning well. He does have at least five spleens, and it's assumed that they do not function, so his immune system is most likely compromised; he will most likely be taking daily antibiotics for his whole life.

Here are a few links that might be helpful, since the medical side of things can get pretty confusing with a heart this special. The surgeries listed for each of his heart conditions don't necessarily apply in our case, since we have to look at the big picture, not just each individual defect; we're still waiting to see how his heart grows before we decide what the next step, which will probably taking place between 3-6 months, will be.